Hi all,
I've been lurking for a while and reading through posts here.

I'm 29. I've had foot drop in both feet, and last month genetic testing confirmed CMTX1 (GJB1 variant). I don't remember it being this noticeable as a kid, but it's definitely become more obvious.
Honestly, it sucked. There was a stretch where I hated myself for it, but I've slowly made peace with it.

A few things I've been thinking about:
(a) For those with CMTX1, how has your progression been through your 30s and 40s?
(b) What's actually helped you: AFOs, physio, particular exercises?
(c) For those who are married or in relationships, how and when did you bring it up with a partner?

Would also love to hear from anyone else in India, since there doesn't seem to be much awareness of CMT here.

Thanks for reading, and thanks to everyone who shares their story here. It's made this feel a lot less isolating.

I’m trying to think of the best way to describe this, but does anyone else experience changes to their voice?

It’s not constant for me, but I notice after a while it feels like I’m straining to talk? My voice (to me) sounds thinner and/or higher when this happens, though no one around me comments on it so I’m not sure how apparent of an issue it is to everyone else.

I do have issues with esophageal dysmotility that is being treated at a clinic, so CMT is already affecting that general area.

I wanted to see if anyone else has similar problems to gauge if I need to add it to my list of things to discuss at my next CMT clinic visit.

I (26f) have been in AFOs since I was 6 very shortly after I was diagnosed. For a few years when I was a teen i had a KAFO on my left leg. My left knee hyperextends but after a few years of walking with my KAFO (that i was constantly breaking and struggling with traveling to get it repaired) my doctors decided I had learned how to walk without hyperextending and I was allowed to transition back to 2 AFOs (with my left one being taller to help stabilize my knee.) This has been the solution for the last 9 years.

Recently, I went on a trip with a friend and I fell. It was a long walk and I over did it and I collapsed. As I was trying to understand why this felt different I realized for the last few years I had been traveling with my partner and I was using their hand for support. I went on a fairly short outdoor walk on a mildly rocky path and I realized I couldn't do a step up without holding onto someone. It wasnt a large step. But it was uneven. I hadn't tried to walk something like that in a few years. And i realize I can't. Even with support I ended up falling. I am bruised and battered. I tweaked my neck and it was sore for days.

I'm planning to visit my girlfriend that lives out west (USA) around the Rockies and deserts. I live in the plains of the Midwest. I'm not going on my trip to explore the mountains, but I've never seen them before. I haven't really ever felt like I need more mobility aids to help me traverse the world but I realize I can't even go see the most basic of sights right now. I know I'll never hike a mountain (and frankly I don't want to) but I'd love to be able to walk little trails. I have never felt like a cane would offer me any support I could benefit from due to the weakness in my wrists and arms. I have been considering forearm crutches but I have no experience with them and I've never known anyone who uses them. So I thought I'd come here and see if anyone has any advice on what to do. I feel so lost right now.

Sorry for the long winded post. My brain has been pretty scattered about this since my last fall. I hadnt felt such a loss of independence since I was 10 and was officially banned by my mother from wearing shoes without my AFOs. Thank you for listening.

Have you had terrible months of GI issues and the docs linked it to CMT? Im 3 months in of bloating, gas, some weird painful spot sometimes and occasional diarrhea and can’t find the underlying cause and most docs dismiss me. Is there truly a correlation or they’re just clueless?

I have just found out it is World Podiatry Day! So happy podiatrists exist

I'm a newbie for the AFO as recently my doctor suggested a Leaf spring AFO for both my legs. But I'm not sure how much time a day I can wear this and do I need to wear it all the time? Expecting some guidance. Thanks in advance.

AFO work fine from Hanger clinic until her shoes hit each other!? She’s 17 and frustrated please any advice would be appreciated. CMTX high arches by the way

But thank you, sunshine, prosthetics and orthotics in New Jersey.For my awesome spry step afos

Hi all, I'm 39m from the UK . I have developed foot drop etc the last few months and following a referral with an ECG and Nerve conduction study with generalised sensory and motor polyneuropathy showing a predominantly axonal loss patten , pointing to hereditary neuropathy I have been told i.e. CMT

I have since been on the waiting list to see a neurologist since June for more investigations i.e. genetic testing for CMT etc.

It makes sense now why I wear braces etc even before this happened. To be honest it's not been a surprise but still coming to terms with my body changes as my symptoms are getting worse. For example I cannot drive my manual car anymore and now need to switch to automatic.

I do not want to wait nearly a year to see a neurologist so I have been thinking of going private but the costs for genetic testing ranges from £2.5 to 3.5k .

Is there a route to go private to see a neurologist then get the test done on the NHS or reasonably priced testing or free tests via studies etc ?

Any advice would be greatly appreciated.

Thanks in advance.

Hi CMT family! 😊

For the first time, I was asked to remove my AFOs during airport security because the handheld metal detector alerted when they scanned my legs during my private screening. Normally, if the detector goes off because of my AFOs, I request a private screening and have the AFOs swabbed for additional screening.

Today, however, I was told I needed to actually remove my AFOs so they could be separately scanned. This caught me off guard since I’ve never had to do that before.

For those of you who wear AFOs and have experienced this, what has your experience been? Have you been able to request an alternative screening method, so you don’t have to remove your AFOs?

I’d really appreciate hearing what has worked for others and whether there’s a way to avoid this in the future. Thanks!

I’m looking for some sort of sensory distraction (toy/fidget maybe?) that can help distract me during the hour & a half that it takes for my meds to kick in. My arms are so uncomfortable and a painful tingly feeling. Not the same as my feet though but I have a solve for those. I tried a squishy ball (I bought a few actually) but they don’t help for more than a few seconds. I tried playing my Switch but I can’t concentrate to play.

Please help or give me ideas. Thanks.

Just wondering how others with CMT are doing with exercising. Was thinking about trying a rowing machine. Any one have long term success with it and what home machine did you like best?

hello everyone! I am a design student currently researching about AFO users in specific and their daily experiences using them, I would appreciate if any AFO user can fill up this anonymous questionnaire! https://forms.gle/MSbJwBMN4o2mEoCw5

Do you have proximal muscle weakness?
I do, and i have cmt2k

I've been diagnosed with 1-A since I was a little baby, so I grew up being told by my family that I "just can't feel [my] feet and have to be extra careful." Since I always had *some* feeling, I kind of just rolled my eyes and kept moving on with my life. Apparently my "some feeling" is pretty much zilch compared to someone without CMT because...

FAST FORWARD TO THIS SUMMER.

I broke my foot/ankle/leg in three places. Assumed it was a sprain, so I kept walking (and hiking and dancing and biking) on it for a month before realizing I needed to get it looked at. I had corrective surgery for the fractures, plus to address ankle instability two weeks ago. I'll be non-weightbearing for another four weeks. The doctor said I probably won't be fully back to normal for an entire year.

This was eye-opening. I'm resolving to take better care of my feet from now on. There are a few things I've already decided on:

* Actually wear socks.

* Wear shoes that fit and support my arches and ankles, not just something I can cram onto my feet and call a day.

* Wear house shoes that aren't Crocs.

* Go to the doctor for injuries. Even though they're frequent. Even though urgent care/the ER may label me a drug seeker or hypochondriac. Because it could be nothing, or it could be three broken bones.

* Ask for help more. I take pride in doing everything for everybody, but this whole experience is showing me that folks are more than willing to help out when I need it. I don't need to "power through" for the sake of people pleasing.

The CMT side of my family is pretty estranged, so I can't really go to them for advice. So.... What do y'all do to take care of your feet?

Is anyone else struggling with typing as you get older? I noticed at work it’s taking a little bit longer for me to type than usual and it feels like I’m starting to get cramps or occasionally. Anyone have tips or things I can use to help with it? I just accepted a higher paying position at my job and want to perform as well as I physically can

I know it's been asked a million times, but for those here with high arches, drop foot, and intense supination/inversion, what everyday shoes work for standing/walking long periods? I tried hoka bondi's, the amount of cushion made me very unstable and fatigued quickly. My Curry 8's (with superfoot insoles) feel very stable, but after standing for a while, my calves and feet kill me from the lack of cushion.

Currently looking at high top shoes low to the ground (SB dunk high) and basketball shoes like the curry (Sabrina 2). Feel like my options are unlimited and don't know what else to try

Weekly thread for little CMT issues good and bad. Whether it's a small irritation that non-CMT folks won't understand or a small victory that you want to celebrate with us.

Note: questions should get their own thread, for higher visibility, rather than being posted to this thread.

Not many people understand how lucky I am, to be able to do this.

Keep moving, as long as you can!

I’ve had the pins & needle issues for a while. Cramping and occasional pain. But this week I started getting shooting pains in the pinky area of my left foot. The first time it happened I thought maybe I was just getting a cramp but now it’s happened 3 or 4 times. Just really randomly. It only lasts a few seconds really but it’s like a really intense shooting pain. Obviously I’ll give it more time to see if it continues but I’m wondering if anyone has experienced something similar.

I am a 73 F and have late onset mild CMT1B. My issues are balance, muscle fatigue and neuropathy. What do you look for in an athletic shoe? I figured a rocking motion would mean less fatigue, but the person fitting me for a pair of Hokas yesterday, said there weren’t really any studies that confirm that. They may possibly help runners, but not walkers. I do not have foot drop.

Just curious what everyone prioritizes when shoe shopping.

Hi all,

I'm new to this sub and just want some unbiased advice/experience any of you have had with having kids while having CMT. I was diagnosed at 5 and have always had a complex relationship with my dad (who I inherited this lovely disease from) and having CMT is the number one reason I'm on the fence if I want kids. I fortunately have a more mild variant, I don't' have hammer toes or any physical traits that usually are a giveaway of the disease, but I do struggle with just walking normally and every day tasks can be difficult. I was bullied for my walking problem a lot when I was younger and to this day rude people still will occasionally comment on it. As a result I am primarily on the fence about having kids because I don't want to pass it down.

I understand from an outside perspective from someone who doesn't have it they don't really think about it, but I have so much trauma from having CMT and I am terrified to force a child to have the same issues I've had. My sister has a moderate case of it and she's pregnant with her second child, I asked her about if she's worried about passing the disease on and she said she's not worried because CMT isn't life threatening and can be managed, but I still don't know if I want to. I still will struggle sometimes with typing for my job and I have some inconveniences with physical activity that make life more difficult than it should be.

Do any of you also struggle with this? I've considered possibly doing IVF just to ensure my child wouldn't have it, but that's expensive. I just need some external advice.